Updates and Rantings

Yesterday Westin celebrated his 13th birthday.  It has been an interesting year for Westin.  As a quick recap, about a year ago he started having stomach pain, like a burning.  We eventually saw a new gastro and he helped us weave our way through testing to determine the cause.  What we ended up finding was that by helping Westin evacuate, with the use of regular Miralax, his burning was much less.  He still has a constant burning feeling, but not too noticeable.  When he goes without eating, longer than usual, he ends up with worse burning, so he tries to remember to eat.  ;)  We had a visit with our gastro this week and we decided that we would just keep on the same path unless we see things get worse.  Since everything in all the testing looked good, there isn't much else we can do at this time.  We "could" try an antidepressant (I wish I could remember the possible diagnosis) that might help, but since it doesn't bother Westin we are going to just stick with what we are doing.  We will repeat his blood work yearly and probably not see the doctor again for a year.  I wish all our specialist were that infrequent!  ;)  The good news:  since the worst part of this stomach journey, Westin has gained all of his weight back plus a good 5-10 pounds.  He is growing like a weed and seems to be thriving.  One road block we did cross once he started feeling better was a lack of appetite.  It seems his anti seizure med (Zonegran) causes anorexia.  With the addition of Periactin his appetite is healthy and we have been able to stay on the Zonegran.  He has been sucessful in being seizure free on the current dose which makes for one less anxiety for his parents.
His diabetes has been fairly painless lately (on his parents) as we have learned to adjust more quickly to changing insulin needs (probably due to all his growth).  Westin seems to live on temp basals as his needs vary often enough that I feel little I don't need to do a permanent basal change at this time.  Although, to make things easier at our endo appointment at the end of the month, I will do a permanent change when the time gets closer.
Now for the rantings!  :D
I have these things that I just have to rant about that Facebook doesn't feel appropriate for.  This morning, one thing is really bothering me.  Choices!  Parents make choices.  Every choice they make affects their family.  Some choices are barely noticed, others have the potential to make major impacts.  13 years ago we made a choice for me to be a stay at home parent.  Our business was such that we could make it on it's income.  When Westin was diagnosed at 2, it was a blessing to be home with him.  When he started school and eventually we ran into problems with administration and his diabetes, it was a blessing to be able to homeschool him.  But let me say, it came with a monetary sacrifice.  There were times when it would have made sense (in a monetary way) for me to go to work.  But it wouldn't have made sense for my family.
Now, I am not saying that it is critical that all families have a stay at home parent, but what I am saying is that all families CAN have a stay at home parent, it is just a choice.  Our family lives a much more modest lifestyle as a result, but it is a choice.  I can't imagine being gone all day and coming home to still fulfill my domestic duties.  I can't imagine having a job that requires travel.  I surely can't imagine being a parent in the military with the fear of deployment or the reality of deployment.  But imagine what all that would be like to my children, especially if it was thrust upon them after years of having me available.  I definitely can't imagine making a choice to work so that I can afford a bigger house, drive a nicer car, take a better vacation!
Rant over!
What I have been doing lately, that I really enjoy, is working on a new blog.  Earth Sheltered is a blog about current earth sheltered home projects across the internet, that I just happen to love watching and getting ideas and learning from.  We have an earth bermed (think walkout basement with a roof) home in our future, in case you wonder what my fascination is.  I was also fortunate to come across an interesting man on the internet that is building a huge earth shelter home north of us and he has really ramped up my energy and interest.  You can learn more by checking out the blog mentioned above.

Sorry for the long absence.  Can't promise when I will be back.  But if I make this my place to rant, it might not be long!  lol

Stomach Burning Update: My son is full of poo

It wasn't until Friday afternoon when I received a call from the gastro office with the x-ray results.  I spoke with someone on Thursday and was informed that the doctor was waiting for the actually CD of the x-ray.  He didn't get the info he needed in the report so he needed to take a closer look at it.  It appears my son is just full of poo!

The doctor had Westin do a "flush" over the weekend which was basically 1 10 ounce bottle of magnesium citrate for 3 days.  Now he is on a maintenance dose of Miralax for the indefinite future.

I guess the thought behind this is that if he is backed up (which the x-rays showed) that the intestines stretch, causing the burning sensation.  So while we thought we had narrowed down certain foods, I think it was more about the time of day.  I think that by dinner time he was just really backed up and that caused the nausea and vomiting.  Since he flushed he has not had any nausea and his burning is better.  I have been told it can take months for his intestines to heal and things to go back to normal.

I want to make one thing clear, my son was having regular bowl movements.  They were usually every other day.  Yet it appears he wasn't evacuating enough poo.  I want to make sure this story in on the internet in case someone else ends up in the same situation.  It seems silly how simple this was.  My son is now making a better effort to eat his vegetables and has actually said, "This salad doesn't taste so bad."  I hope he has learned that he has to take better care of his body and feed it correctly.   Also note that he is on a gluten free diet which makes eating whole grains a bit more difficult compared to the rest of our family who eats homemade whole wheat bread.

Endoscopy Results and what's next?

Biopsy results from the endoscopy came back clear. Actually, the term was, "Unremarkable." I guess this time that just means nothing to remark on. ;) So since that all looked great, we can now say that Westin definitely does not have Eosinophilic Esophagitis! Yeah!  But we still don't know what is causing his stomach burning. 

The gastro sent us home from the hospital with a prescription for Carafate.   Westin is to take it three times a day before meals.  Westin has still had the constant burning but has not had any attacks.  He has been careful about what he eats but each day he is getting a bit more daring.  Although, he did pass on steak last night.  Carafate is used to treat ulcers (it serves as a protective coating to let the ulcer heal) so I don't know how long they will keep him on it. 

While on the phone with the nurse practitioner from the gastro's office, she said that the doctor would like to have an abdominal x-ray taken.  So yesterday afternoon we got that taken care of.  While checking in I noticed the order said, "Check fecal load"...so I don't know if he is thinking there could be a blockage or slow emptying?  I have called but haven't yet heard the results of the x-ray.

Endoscopy OVER!

We are finally home and settled in!  I am beat.  I know we are all gonna sleep well tonight.

We arrived at the hospital about 15 minutes early.  By the time we got there Westin's blood sugar was sitting at about 170.  We struggled all early afternoon to get it up but we made it.  :)  We were shocked when we got to our room to find out that the sedation would take place there, the scope would take place there and the recovery would take place there, all in the same room.  Our last experience was at U of M and it was more of a big room with dividing curtains.  They did everything in a different area and then returned for recovery.  We were not able to be with him until he was well awake.  I thought it was a good experience until this time.  Wow, it was great.  We were in a little waiting room right across the hall.  We were back in the room with him as soon as we were done speaking with the doctor.  We were able to comfort him while he started to wake.  I really couldn't have asked for more other than an answer to his problems.

Everyone was very accommodating with his diabetes.  The nurse shared a cute story with us before we left that I want to share because I think the other diabetes parents will get a kick out of it.  Westin had a continuous glucose monitor on him and the nurse used his meter to check him when they were done with the procedure.  He was 134 and she said she would tell us what his blood sugar was.  Then Dr A (the gastro) spoke up and said, "No, I will tell them."  Then the anesthesiologist jumped in and he wanted to be able to tell us.  She said they were like two school boys fighting over it.  I had to chuckle.  I chuckle now thinking about it.  

Oh, the anesthesiologist won, he got to tell us!  :D

Dr A came in and told us that everything actually looked normal.  He took lots of biopsies so they might tell us something but I am not holding a lot of hope.  The good news is that he doesn't appear to have EE (eosinophilic esophagitis) which was believed to be the cause of his swallowing issues.  Now we believe it might have just been drainage causing the trouble.  :)  Small intestines looked good so celiac seems to be well under control.  :)  Stomach lining looked fine, esophagus looked fine.  So we had a little brainstorming session with him, kind of a pow wow.  Jason went over his symptoms and mentioned a hand full of things I have read about online.  (I read so much that I don't share with Jason that it all starts to run together for me so I am glad he was there)  We talked about what tests to do next.  He is going to try to get the breath tests for fructose and lactose moved up.  He was gonna go back over the upper gi and see if something was missed.  He left us to head back to his office and pour over Westin's history.  Oh, but not before Jason strong armed him into writing a RX for something that might help.  Something that will coat is stomach before he eats.  Maybe it will help, maybe it won't but Jason couldn't stand the idea of not having something to try and to offer Westin.

I would say that we were in recovery for about an hour.  But before we left we swung by a friend's room to visit him before we left.  By the time we filled the RX and picked up some gluten free crackers we got home a little after 8pm...what a long day!  

We are very lucky to have great doctors.  We struggled to find a gastro we really liked and I couldn't be happier with Dr A.  I feel very, very lucky.

Thank you to everyone for sending us their positive energy.  Have I said how lucky I am to have great friends too?  Well, I feel very blessed.  :)

PS...pancreas blood work came back normal.

A mom with a lot of time on her hands and not following the rules

I have already broke this news on facebook but I decided it was worth blogging about.  Maybe it will inspire others to request more from our physicians. 

My son, Westin, has been dealing with chronic (constant) burning in his stomach.  It doesn't go away.  It only gets worse or a little better.  It is never gone or even close to gone.  I can remember something starting back as early as November because I remember mentioning it to his allergist.  But it wasn't until the end of December or so that it started getting to this point of constant pain. 

We have seen numerous Gastro's over the years.  Westin saw his first gastro, oh, maybe 7 years ago or so.  He was then diagnosed with Celiac Disease 5 years ago.  Celiac is treated with diet and we didn't really see a need for the gastro at that time.  But we were encouraged to go once a year for a check up.  So we had our first gastro 7 years ago.  We saw a different one for the Celiac diagnosis, who I didn't care for.  So when we were encouraged to do a annual follow up, I requested yet another gastro.  Then we just kind of left it alone and hadn't been followed since.  Then 2 years ago Westin started having swallowing issues.  Our allergist refered us to a gastro in Grand Rapids (until this point we had stayed with the gastros in Kalamazoo.  We met with this new gastro once.  I didn't care for the drive.  I hated their lab.  And I found that I came accross the answer to his swallowing problems on my own, so they really were of no help. 

So with this new problem I decided it was time to give the new gastro in town a try.  Our endo spoke highly of him so I started the request to transfer records to his office and wait for our initial appointment (this was November).  Initially we didn't get an appointment set until the beginning of March.  When his burning started to really escalate in January, I requested to be added to a cancelation list.  The day we ended up in the ER, they suddenly were able to move his appointment up to Feb 15th. 

We met with the new gastro and I really, really liked him.  He scheduled numerous tests, but unfortunately they were unable to schedule his endoscopy until April 15th, a full 2 months after our appointment.  While I had time to wait, I have become Sherlock Mom.  I can't sit here for 2 months and not be actively trying to heal my son.  So of course I take to the internet with any idea that pops in my head.  I have been trying to eliminate lactose and fructose (which he will be tested for in April also) to see if those are causing problems.  I have started him on digestive enzymes to try to alleviate some burning for him.  I have been investigating possible gall bladder problems.  So far I have not found any magic answer.  Most days we keep the burning as mild as we can.  On occassion we don't.  Saturday was one of those days that the burning got so bad that he was vomitting.  It was a long day as we chased low blood sugars and rising ketones. 

Saturday pushed me to start looking for our gastro's email address.  I wanted direct communication with him without having to wait for an appointment.  I have called the office to let them no of new symptoms and I get the nurse who puts it in the chart and it seems to disappear into a black hole.  So to google I went.  I thought I had found it but after shooting off my email and getting it kicked back I realized that was an old address, from when he was a resident at a local medical center, but not the one that he is at now.  So I did a little thinking, after not finding any other email options, and I came up with a pattern for how our hospital generally creates email addresses...like in this case it is the last name and first letter of first name @ our hospital.com.  So I decided to give it a try.  This was Sunday afternoon.  I waited a while and nothing got kicked back so I was hopeful that I nailed it.

Monday came and I kind of forgot about the email.  But then at about 6pm I got a phone call and who was it on the other end but our gastro!  I was in shock.  It worked!  He spoke with me about my concerns.  He told me to definitely NOT try the hydrocloric acid pills I had bought at the health food store in my desperation to make my son better (that right there is probably what got him to actually call me).  he he  But most importantly, he agreed that we should move the endoscopy up and that his nurse would be calling me to see about getting him scheduled in the OR.  Success!

So while I still haven't heard from the nurse (I was on the phone most of the night with my best friend) I got what I needed.  I need a lot of communication with my doctors.  I have a complicated child.  Now I don't recommend stalking your doctor if it is for something minor.  But in some situations, you need to communicate with each other and I find email to be unintrusive.  I can get my needs/concerns communicated and he/she can answer me when they have a convenient time to do so.  I think everyone wins. 

Why do I let it bother me?

It is early Sunday evening, March 21, 2010.  Healthcare reform is about to be voted in.  I have been popping in at www.huffingtonpost.com every once in a while to see the daily news.  Of course the majority of it is about the healthcare bill.  I will be so happy to see this done and over with.  While I would have prefered a public option or even better, a single payer system, this is better than nothing.  At the very least, my son with a chronic illness will have some options if we are to ever afford health insurance for the family before the subsidies kick in, or he ages out of the system.  That, as a parent of a child already dealing with numerous health issues, is a huge weight off my shoulders.  I worry for my son.  He will already have so much to deal with, I can't imagine having the worries of how he will sustain his own life.

But this goes beyond my son with a chronic illness.  I would like insurance too.  I am in my mid 30s and I feel the pressure to have insurance.  Maybe we would qualify for medicaid based on our current income, I don't know.  But see, just because I am poor, it doesn't mean I go looking for all the assistance I can find.  I look for what I need, what my children need.  Yet I see so many of my friends and family making assumptions about "the poor" in such broud sweeping strokes.  If I speak up I hear the "your the exception to the rule".  But am I?  I think I am just like a lot of struggling families out there.  Because you "know me" then I am the exception?  Are you really that short sighted?  Can you not put yourself in anyone else's shoes and feel their struggle?

I really don't know why this bothers me so deeply.  Yet, I am proud to say that it bothers me.  I have a heart.  I care about others, not just myself.  I have seen bad things happen to good people.  I know that those bad things can happen to me and I know they can happen to you.  Part of me just wants to scream and tell the world of my own personal troubles, to shine the light on the truth and say, "Hey, you are talking about ME!" when you make those statements.

So while I can enjoy friendships with people with different beliefs from my own, I can't tolerate ignorance and self superiority.  I enjoy friendships with people from so many walks of life and representing many races and religions.  I benefit from them and I hope they benefit from me.  But when your words are words of ignorance and hate then I have to question your character.  When character comes into question, for me, it is a deal breaker.  

Swagbucks Tip!!!

I am going to write this post and post it everywhere!  So don't be surprised if you see this on more than one of my blogs...

Do you use Swagbucks?  If you don't, you need to!  First you might be asking yourself, what are Swagbucks?  In short, you can earn swagbucks for searching using their toolbar.  That is the easiest way to earn them.  So everytime I need to search something (which happens many times a day) I use the Swagbucks toolbar and randomly earn bucks.  It is always a pleasant surprise.  :)

So, the reason I started using Swagbucks was to earn FREE Amazon gift cards.  I love shopping on Amazon!  I use it a lot to buy gluten free food, books, household items, etc.  Basically, Amazon carries just about everything.  But Swagbucks can be used for all sorts of things.  I can get tons of different types of giftcards, including itunes, or I can purchase electronics, books, toys, etc.

Here is the great tip I learned today and I want to pass it on to you!  I have been working towards a $25 dollar Amazon gift card.  I need 3150 swagbucks for a $25 gift card. I just found out that I can buy 5 $5 gift cards for 2250 swagbucks...that is a big savings! For 3150 swagbucks I can actually buy 7 $5 gift cards!

If you would like to check out Swagbucks, click here to learn more.